Most of us simply don’t know how many people die of various causes—or that it’s possible for fewer to do so. Our acceptance of those deaths never accounted for alternatives. “When was I offered the choice between having a society where you’re expected to go into work when you’re ill or having fewer people die of the flu every year?” Wrigley-Field, the sociologist, said to me. Even when the potential benefits are clear, there’s no universal algorithm that balances the societal disruption of a policy against the number of lives saved. Instead, our attitudes about preventing death revolve around how possible it seems and how much we care. About 40,000 Americans are killed by guns every year, but instead of preventing these deaths, “we have organized ourselves around the inevitability of gun violence,” Sonali Rajan of Columbia University’s Teachers College said on Twitter.
Ed Yong in The Atlantic, updated March 8, 2022. https://www.theatlantic.com/health/archive/2022/03/covid-us-death-rate/626972/
The U.S. reported more deaths from COVID-19 last Friday than deaths from Hurricane Katrina, more on any two recent weekdays than deaths during the 9/11 terrorist attacks, more last month than deaths from flu in a bad season, and more in two years than deaths from HIV during the four decades of the AIDS epidemic. At least 953,000 Americans have died from COVID, and the true toll is likely even higher because many deaths went uncounted. COVID is now the third leading cause of death in the U.S., after only heart disease and cancer, which are both catchall terms for many distinct diseases. The sheer scale of the tragedy strains the moral imagination. On May 24, 2020, as the United States passed 100,000 recorded deaths, The New York Times filled its front page with the names of the dead, describing their loss as “incalculable.” Now the nation hurtles toward a milestone of 1 million. What is 10 times incalculable?
In a study of 29 high-income countries, the U.S. experienced the largest decline in life expectancy in 2020 and, unlike much of Europe, did not bounce back in 2021. The U.S. was also the only country whose lowered life span was driven mainly by deaths among people under 60. Dying from COVID robbed each American of about a decade of life on average. As a whole, U.S. life expectancy fell by two years—the largest such decline in almost a century. Neither World War II nor any of the flu pandemics that followed it dented American longevity so badly.
Every American who died of COVID left an average of nine close relatives bereaved. Roughly 9 million people—3 percent of the population—now have a permanent hole in their world that was once filled by a parent, child, sibling, spouse, or grandparent. An estimated 149,000 children have lost a parent or caregiver. Many people were denied the familiar rituals of mourning—bedside goodbyes, in-person funerals. Others are grieving raw and recent losses, their grief trampled amid the stampede toward normal. “I’ve known multiple people who didn’t get to bury their parents or be with their families, and now are expected to go back to the grind of work,” says Steven Thrasher, a journalist and the author of The Viral Underclass, which looks at the interplay between inequalities and infectious diseases. “We’re not giving people the space individually or societally to mourn this huge thing that’s happened.”
After many of the biggest disasters in American memory, including 9/11 and Hurricane Katrina, “it felt like the world stopped,” Lori Peek, a sociologist at the University of Colorado at Boulder who studies disasters, told me. “On some level, we owned our failures, and there were real changes.” Crossing 1 million deaths could offer a similar opportunity to take stock, but “900,000 deaths felt like a big threshold to me, and we didn’t pause,” Peek said. Why is that? Why were so many publications and politicians focused on reopenings in January and February—the fourth- and fifth-deadliest months of the pandemic? Why did the CDC issue new guidelines that allowed most Americans to dispense with indoor masking when at least 1,000 people had been dying of COVID every day for almost six straight months? If the U.S. faced half a year of daily hurricanes that each took 1,000 lives, it is hard to imagine that the nation would decide to, quite literally, throw caution to the wind. Why, then, is COVID different?
Many aspects of the pandemic work against a social reckoning. The threat—a virus—is invisible, and the damage it inflicts is hidden from public view. With no lapping floodwaters or smoking buildings, the tragedy becomes contestable to a degree that a natural disaster or terrorist attack cannot be. Meanwhile, many of those who witnessed COVID’s ruin are in no position to discuss it. Health-care workers are still reeling from “death on a scale I had never seen before,” as an intensive-care nurse told me last year. The bereaved face guilt on top of sadness: “I think about the way it would run through families and tight-knit groups and the huge psychological toll as people think, Am I the one who brought it in?” Whitney Robinson, a social epidemiologist at the University of North Carolina at Chapel Hill, told me. And though 3 percent of Americans have lost a close family member to COVID, that means 97 percent have not. The two years that were shaved off of the average life span undid two decades of progress in health, but in 2000, “it didn’t feel like we were living under a horrible mortality regime,” Andrew Noymer, a demographer at UC Irvine, told me. “It felt normal.”
To grapple with the aftermath of a disaster, there must first be an aftermath. But the coronavirus pandemic is still ongoing, and “feels so big that we can’t put our arms around it anymore,” Peek told me. Thinking about it is like staring into the sun, and after two years, it is no wonder people are looking away. As tragedy becomes routine, excess deaths feel less excessive. Levels of suffering that once felt like thunderclaps now resemble a metronome’s clicks—the background noise against which everyday life plays. The same inexorable inuring happened a century ago: In 1920, the U.S. was hit by a fourth wave of the great flu pandemic that had begun two years earlier, but even as people died in huge numbers, “virtually no city responded,” wrote John M. Barry, a historian of the 1918 flu. “People were weary of influenza, and so were public officials. Newspapers were filled with frightening news about the virus, but no one cared.”
Fatalism has also been stoked by failure. Two successive administrations floundered at controlling the virus, and both ultimately shunted the responsibility for doing so onto individuals. Vaccines brought hope, which was dashed as uptake stagnated, other protections were prematurely rolled back, and the Delta variant arrived. During that wave, parts of the South and Midwest experienced “a shocking level of death and transmission that was on par with the worst of that previous winter wave,” Robinson said, and even so the policy response was anemic at best.
As Martha Lincoln, a medical anthropologist at San Francisco State University, told me in September 2020, if salvation never comes, “people are going to harden into a fatalistic sense that we have to accept whatever the risks are to continue with our everyday lives.”
America is accepting not only a threshold of death but also a gradient of death. Elderly people over the age of 75 are 140 times more likely to die than people in their 20s. Among vaccinated people, those who are immunocompromised account for a disproportionate share of severe illness and death. Unvaccinated people are 53 times more likely to die of COVID than vaccinated and boosted people; they’re also more likely to be uninsured, have lower incomes and less education, and face eviction risk and food insecurity.
Working-class people were five times more likely to die from COVID than college graduates in 2020, and in California, essential workers continued dying at disproportionately high rates even after vaccines became widely available. Within every social class and educational tier, Black, Hispanic, and Indigenous people died at higher rates than white people. If all adults had died at the same rates as college-educated white people, 71 percent fewer people of color would have perished. People of color also died at younger ages: In its first year, COVID erased 14 years of progress in narrowing the life-expectancy gap between Black and white Americans. Because death fell inequitably, so did grief: Black children were twice as likely to have lost a parent to COVID than white ones, and Indigenous children, five times as likely. Older, sicker, poorer, Blacker or browner, the people killed by COVID were treated as marginally in death as they were in life. Accepting their losses comes easily to “a society that places a hierarchy on the value of human life, which is absolutely what America is built on,” Debra Furr-Holden, an epidemiologist at the Michigan State University, told me.
These recent trends oozed from older ones. Well before COVID, nursing homes were understaffed, disabled people were neglected, and low-income people were disconnected from health care. The U.S. also had a chronically underfunded public-health system that struggled to slow the virus’s spread; packed and poorly managed “epidemic engines” such as prisons that allowed it to run rampant; an inefficient health-care system that tens of millions of Americans could not easily access and that was inundated by waves of sick patients; and a shredded social safety net that left millions of essential workers with little choice but to risk infection for income.
Generations of racist policies widened the mortality gap between Black and white Americans to canyon size: Elizabeth Wrigley-Field, a sociologist at the University of Minnesota, calculated that white mortality during COVID was still substantially lower than Black mortality in the pre-pandemic years. In that light, the normalizing of COVID deaths is unsurprising. “When deaths happen to people who are already not valued in a million other ways, it’s easier to not value their lives in this additional way,” Wrigley-Field told me.
While epidemics flow downward into society’s cracks, medical interventions rise upward into its peaks. New cures, vaccines, and diagnostics first go to people with power, wealth, education, and connections, who then move on; this explains why health inequities so stubbornly persist across the decades even as health problems change. AIDS activism, for example, lost steam and resources once richer, white Americans had access to effective antiretroviral drugs, Steven Thrasher told me, leaving poorer Black communities with high rates of infection. “It’s always a real danger that things get worse once the people with the most political clout are okay,” Thrasher said. Similarly, pundits who got vaccinated against COVID quickly started arguing against overcaution and (inaccurately) predicting the pandemic’s imminent end. The government did too, framing the crisis as solely a matter of personal choice, even as it failed to make rapid tests, high-quality masks, antibody cocktails, and vaccines accessible to the poorest groups. The CDC’s latest guidelines continue that trend, as my colleague Katherine J. Wu has argued. Globally, the richer north is moving on while the poorer south is still vulnerable and significantly unvaccinated.
All of this “shifts the burden to the very groups experiencing mass deaths to protect themselves, while absolving leaders from creating the conditions that would make those groups safe,” Courtney Boen, a sociologist at the University of Pennsylvania, told me. “It’s a lot easier to say that we have to learn to live with COVID if you’re not personally experiencing the ongoing loss of your family members.”
Richard Keller, a medical historian at the University of Wisconsin at Madison, says that much of the current pandemic rhetoric—the premature talk of endemicity; the focus on comorbidities; the from-COVID-or-with-COVID debate—treats COVID deaths as dismissible and “so inevitable as to not merit precaution,” he has written.
“Like gun violence, overdose, extreme heat death, heart disease, and smoking, [COVID] becomes increasingly associated with behavioral choice and individual responsibility, and therefore increasingly invisible.” We don’t honor deaths that we ascribe to individual failings, which could explain, Keller argues, why national moments of mourning have been scarce. There have been few pandemic memorials, save some moving but temporary art projects. Resolutions to turn the first Monday of March into a COVID-19 Victims and Survivors Memorial Day have stalled in the House and Senate. Instead, the U.S. is engaged in what Keller calls “an active process of forgetting.” If safety is now a matter of personal responsibility, then so is remembrance.
No one knows how many people will die from COVID in the coming years. The number will depend on our collective behavior, how many more people can be vaccinated or boosted, the length and strength of immunity, what new variants arise, and more. Andrew Noymer, the demographer, thinks that COVID will kill fewer people per year than it has in the past two, but will probably still be more lethal than the flu, which sets a plausible and very wide range of somewhere between 50,000 and 500,000 annual deaths. (COVID will also continue to cause long-term disability.)
How much of this extra mortality will the U.S. accept? The CDC’s new guidelines provide a clue. They recommend that protective measures such as indoor masking kick in once communities pass certain thresholds of cases and hospitalizations. But the health-policy experts Joshua Salomon and Alyssa Bilinski calculated that by the time communities hit the CDC’s thresholds, they’d be on the path to at least three daily deaths per million, which equates to 1,000 deaths per day nationally. And crucially, the warning lights would go off too late to prevent those deaths. “As a level of mortality the White House and CDC are willing to accept before calling for more public health protection, this is heartbreaking,” Salomon said on Twitter. Read: The millions of people stuck in pandemic limbo
If 1,000 deaths a day is not acceptable, what threshold would be? The extreme answer—none!—is impractical, because COVID has long passed the point where eradication is possible, and because all interventions carry at least some cost. Some have suggested that we should look to other causes of death—say, 39,000 car fatalities a year, or between 12,000 and 52,000 flu deaths—as a baseline of what society is prepared to tolerate. But this argument rests on the false assumption that our acceptance of those deaths is informed. Most of us simply don’t know how many people die of various causes—or that it’s possible for fewer to do so. The measures that protected people from COVID slashed adult deaths from flu and all but eliminated them among children. Our acceptance of those deaths never accounted for alternatives. “When was I offered the choice between having a society where you’re expected to go into work when you’re ill or having fewer people die of the flu every year?” Wrigley-Field, the sociologist, said to me. Even when the potential benefits are clear, there’s no universal algorithm that balances the societal disruption of a policy against the number of lives saved. Instead, our attitudes about preventing death revolve around how possible it seems and how much we care. About 40,000 Americans are killed by guns every year, but instead of preventing these deaths, “we have organized ourselves around the inevitability of gun violence,” Sonali Rajan of Columbia University’s Teachers College said on Twitter.
Doing the same for COVID, as Rajan says is now happening, means prematurely capitulating to the pathogens that come next. The inequities that were overlooked in this pandemic will ignite the next one—but they don’t have to. Improving ventilation in workplaces, schools, and other public buildings would prevent deaths from COVID and other airborne viruses, including flu. Paid sick leave would allow workers to protect their colleagues without risking their livelihood. Equitable access to antivirals and other treatments could help immunocompromised people who can’t be protected through vaccination. Universal health care would help the poorest people, who still bear the greatest risk of infection. A universe of options lies between the caricatured extremes of lockdowns and inaction, and will save lives when new variants or viruses inevitably arise. https://f4aeb4df797c7453f16d16242d5bc7f4.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
Such changes are popular. Stephan Lewandowsky, from the University of Bristol, presented a representative sample of Americans with two possible post-COVID futures—a “back to normal” option that emphasized economic recovery, and a “build back better” option that sought to reduce inequalities. He found that most people preferred the more progressive future—but wrongly assumed that most other people preferred a return to normal. As such, they also deemed that future more likely. This phenomenon, where people think widespread views are minority ones and vice versa, is called pluralistic ignorance. It often occurs because of active distortion by politicians and the press, Lewandowsky told me. (For example, a poll that found that mask mandates are favored by 50 percent of Americans and opposed by just 28 percent was nonetheless framed in terms of waning support.) “This is problematic because over time, people tend to adjust their opinions in the direction of what they perceive as the majority,” Lewandowsky told me. By wrongly assuming that everyone else wants to return to the previous status quo, we foreclose the possibility of creating something better.
There is still time. Steven Thrasher, the journalist, noted that a new wave of AIDS memorials is only now starting to show up, long after the start of that pandemic. COVID will similarly persist, as will the chance to reckon with its cost, and the opportunity to steel our society against similar threats. Right now, the U.S. is barreling toward the next pandemic, having failed to learn the lessons of the past two years, let alone the past century. But Wrigley-Field, the sociologist, told me that she draws inspiration from the big social movements of the past, where gains in equality that seemed impossible at first were eventually achieved. “We’re really bad judges of what is possible based on what we’re experiencing in a particular moment,” she said. “Nothing major that has mattered for health came quickly or easily.”
This article originally reported a higher-end estimate of 17 years of life, on average, lost to COVID. The correct estimate is closer to a decade.
The Atlantic’s COVID-19 coverage is supported by grants from the Chan Zuckerberg Initiative and the Robert Wood Johnson Foundation. Ed Yong is a staff writer at The Atlantic, where he covers science.
When a society acts as if the deaths of vulnerable people are unavoidable, and does little to lessen their risks, it is still implicitly assigning lower value to certain lives. Ramps, accessibility buttons, screen readers, and many other measures have made life easier for disabled people. A new wave of similar accommodations is now necessary to make immunosuppression less of a disability in the COVID era.
THE MILLIONS OF PEOPLE STUCK IN PANDEMIC LIMBO
What does society owe immunocompromised people? In The Atlantic, by Ed Yong
FEBRUARY 16, 2022 https://www.theatlantic.com/health/archive/2022/02/covid-pandemic-immunocompromised-risk-vaccines/622094/
When the coronavirus pandemic began, Emily Landon thought about her own risk only in rare quiet moments. An infectious-disease doctor at the University of Chicago Medicine, she was cramming months of work into days, preparing her institution for the virus’s arrival in the United States. But Landon had also recently developed rheumatoid arthritis—a disease in which a person’s immune system attacks their own joints—and was taking two drugs that, by suppressing said immune system, made her more vulnerable to pathogens. Normally, she’d be confident about avoiding infections, even in a hospital setting. This felt different. “We didn’t have enough tests, it was probably around us everywhere, and I’m walking around every day with insufficient antibodies and hamstrung T-cells,” she told me. And she knew exactly what was happening to people who got infected. One night, she found that in the fog of an earlier day, she had written on her to-do list: Make a will. “And I realized, Oh my God, I could die,” she said. “I just cried and cried.”
Two years later, COVID-19 is still all around us, everywhere, and millions of people like Landon are walking around with a compromised immune system. A significant proportion of them don’t respond to COVID vaccines, so despite being vaccinated, many are still unsure whether they’re actually protected—and some know that they aren’t. Much of the United States dropped COVID restrictions long ago; many more cities and states are now following. That means policies that protected Landon and other immunocompromised people, including mask mandates and vaccination requirements, are disappearing, while accommodations that benefited them, such as flexible working options, are being rolled back.
This isn’t a small group. Close to 3 percent of U.S. adults take immunosuppressive drugs, either to treat cancers or autoimmune disorders or to stop their body from rejecting transplanted organs or stem cells. That makes at least 7 million immunocompromised people—a number that’s already larger than the populations of 36 states, without even including the millions more who have diseases that also hamper immunity, such as AIDS and at least 450 genetic disorders.
In the past, immunocompromised people lived with their higher risk of infection, but COVID represents a new threat that, for many, has further jeopardized their ability to be part of the world. From the very start of the pandemic, some commentators have floated the idea “that we can protect the vulnerable and everyone else can go on with their lives,” Seth Trueger, who is on immunosuppressants for an autoimmune complication of cancer, told me. “How’s that supposed to work?” He is an emergency doctor at Northwestern Medicine; he can neither work from home nor protect himself by avoiding public spaces. “How am I supposed to provide for my family or live my life if there’s a pandemic raging?” he said. Contrary to popular misconceptions, most immunocompromised people are neither visibly sick nor secluded. “I know very few people who are immunocompromised and get to live in a bubble,” says Maggie Levantovskaya, a writer and literature professor who has lupus, an autoimmune disorder that can cause debilitating inflammation across the entire body.
As the coronavirus moves from a furious boil to a gentle simmer, many immunocompromised people (like everyone else) hope to slowly expand their life again. But right now, “it’s like asking someone who cannot swim to jump into the ocean instead of trying a pool,” Vivian Cheung, a biologist at the University of Michigan who has a genetic autoimmune disorder, told me. “I feel this pressure of jumping into the Pacific and not knowing if I can survive or not.”
Whether that changes depends on the accommodations society is willing to make. Ramps, accessibility buttons, screen readers, and many other measures have made life easier for disabled people, and a new wave of similar accommodations is now necessary to make immunosuppression less of a disability in the COVID era. Exactly none of the people I talked with wants a permanent lockdown. “It’s not like immunocompromised people are enjoying any of this,” Levantovskaya told me. What they do want—work flexibility, better ways of controlling infectious diseases, and more equitable medical treatments—would also benefit everyone, not just now but for the rest of our lives.
For more than three decades, Julia Irzyk has lived with lupus symptoms. She also has rheumatoid arthritis, a degenerative spinal condition, and heart problems. When she gets colds, they tend to progress to full-blown pneumonia, so even before the pandemic she was mindful about infections. She’d avoid big events and rarely ate out. When she flew, which she did infrequently, she’d wear a mask. For this story, I spoke with 21 people who are either immunocompromised or care for those who are; others were similarly fastidious pre-pandemic about washing their hands, getting their flu vaccines, and avoiding people who were clearly sick. Landon wouldn’t go to parties at the height of flu season. Cheung wore masks on flights and wiped down the surfaces around her. But none of them was living in seclusion. All of them had rich social lives.
COVID changed that. The new coronavirus forced them to go beyond their previous precautions, because it is deadlier than normal respiratory pathogens, can spread from people who aren’t obviously sick, and did so at breakneck speed. Compared with others, when immunocompromised people get COVID-19, they tend to be sicker for longer. Irzyk’s rheumatologist told her not to go out: If you get this, your heart and lungs won’t be able to take it. So she went seven months without leaving her home, and still spends most of her time there. She missed both her grandmothers’ funerals. She delayed important medical procedures, even as her lupus symptoms got worse because one of her treatments—hydroxychloroquine—ran out of stock after Donald Trump falsely touted it as a COVID cure.
COVID has also defined Harper Corrigan’s life. She was born in September 2019—nine weeks early, and with a rare brain malformation called lissencephaly. She has never played with another child even though, being sassy and funny, she really wants to. A week before the U.S. shut down in March 2020, Harper had to have a tracheostomy, leaving her even more vulnerable to respiratory viruses and, in turn, potentially deadly seizures. The Corrigans spent 11 months with her in the hospital. Even after her health had stabilized, they couldn’t find any nurses to help with home care, and the hospital wouldn’t discharge her. When they finally got home, they went into strict lockdown. Children with Harper’s condition aren’t expected to live to adulthood, so her mother, Corey, told me that her priority is to “squeeze a full life into an unknown amount of time.” But that requires the spread of the virus to slow, and vaccines to be authorized for children under 5.
The danger of the pandemic’s first fearful year still hangs over the heads of many immunocompromised people, even as those around them relax into the security of vaccination. Vaccines should substantially slash the risk of infection and severe illness, but many immunocompromised people barely respond to the COVID shots. At one extreme, about half of organ-transplant recipients produce no antibodies at all after two vaccine doses. Compared with the general vaccinated public, they are 82 times more likely to get breakthrough infections and 485 times more likely to be severely ill. Should they get infected, their risk of hospitalization is a coin flip. Their risk of death is one in 10. “Imagine walking around and being in society and thinking, If you give me COVID, I might have a 10 percent risk of dying,” Dorry Segev, a transplant surgeon at the Johns Hopkins University School of Medicine, told me. His patients are better off than unvaccinated people, “but not by much, despite all we’ve done.”
Other groups of immunocompromised people fare better after vaccination, but Segev estimates that a quarter are still insufficiently protected. And some people with autoimmune disorders cannot be fully vaccinated, because their initial doses led to severe flare-ups of their normal symptoms. Alfred Kim, a rheumatologist at Washington University in St. Louis who specializes in lupus, told me that 5 to 10 percent of his patients experienced these problems; so did two of the people I interviewed, both of whom declined further shots.
Many immunocompromised people are now stuck in limbo—unsure about how safe they really are, even after getting three shots and a booster, as the CDC advises. Scientific studies can hint at the average risks across large groups but offer little certainty for individuals. Sometimes, no studies exist at all, as is the case for Cheung, whose genetic disorder is so rare that it doesn’t even have a name. “As a doctor, I’m trained to parse scientific data, but I can’t parse my way to answers that don’t exist,” says Lindsay Ryan, a physician at UC San Francisco who has a neurological autoimmune disorder. “Could I actually define my risk of death if I got COVID? No, I really can’t. And that’s a hard thing to make peace with.”
Each individual infection is its own high-stakes gamble. I’ve spoken with immunocompromised people who got COVID and were fine. Others had mild initial illness, but then developed more severe long-COVID symptoms. Yet others are certain they’d fare badly: Chloe Atkins, a political scientist who works on disability and employment issues, has an autoimmune disease called myasthenia gravis, and “colds can immediately make it difficult for me to breathe, see, move, walk, or talk,” she told me. She knew two people with the same condition, both of whom died from COVID. She and others are facing the same arduous risk assessments that everyone else contends with—but heightened because of the greater possible costs of choosing wrongly. And while they wrestle with those uncertainties, the gulf between them and the rest of society is widening.
Over the past year, as many Americans reveled in their restored freedoms, many immunocompromised people felt theirs shrinking. When the CDC announced that fully vaccinated Americans no longer needed to mask indoors, simple activities such as grocery shopping became more dangerous for immunocompromised people, who were offered no advice from the nation’s top public-health agency. When Joe Biden said in a speech that unvaccinated Americans were “looking at a winter of severe illness and death,” “I felt like he was talking to me,” Cheung said. And when commentators bemoaned irrational liberals who refused to abandon pandemic restrictions, many of the people I spoke with felt they were being mocked for trying to protect themselves and their loved ones. “I already feel different from other people because of this situation,” Colleen Boyce told me; she donated a kidney to her husband, Mark, who is now immunosuppressed. “The thought that when I mask up, others might look at me like there’s something wrong with me is hard to handle.”
These changes were especially hard to take because, for a time, immunocompromised people caught a glimpse of something better. Beth Wallace, a rheumatologist at the University of Michigan, told me that many of her patients once accepted that viruses would regularly flatten them but have now realized that they don’t have to live that way. Cautious behaviors and flexibility around work meant that the flu practically vanished, and many immunocompromised people were actually less sick during the COVID era than before. And while they don’t want lockdowns to persist, they had hoped that the flexibility might. Sung Yun Pai of the National Institutes of Health told me that in the past, her patients—children who receive stem-cell transplants to treat genetic immune disorders—would simply have had to miss school. “In some ways, the whole world going virtual gave them better access to education,” she said. But remote options are now disappearing, and not just in schooling. Several immunocompromised people told me that their social world is shrinking, as friends who earlier in the pandemic hung out with them virtually are now interested only in face-to-face gatherings.
Work is becoming less flexible too. Finding and keeping jobs can be very hard for people with chronic illnesses such as lupus, which can leave them feeling powerless to advocate for themselves. With “close to no say about your working conditions, you can only do so much to protect yourself,” Levantovskaya, the literature professor, said. Several immunocompromised people have been told that they’re holding the rest of society back. In fact, it is the opposite: They’re being forced to reintegrate with no regard for their residual risk.
And perhaps worst of all, immunocompromised people began to be outright dismissed by their friends, relatives, and colleagues because of the misleading narrative that Omicron is mild. The variant bypassed some of the defenses that even immunocompetent people had built up, rendered several antibody treatments ineffective, and swamped the health-care system that immunocompromised people rely on. And yet one of Wallace’s patients was told by their sister that no one is dying anymore. In fact, people are still dying, and immunocompromised people disproportionately so. Ignoring that sends an implicit message: Your lives don’t matter.
Sometimes, the message becomes explicit. Several of the immunocompromised people I talked with have been told—sometimes by family members or former partners—that they are a burden on society, that they don’t deserve a relationship, that their dying would be natural selection. When Corey Corrigan was trying to decide whether to put Harper through another surgery, “a medical provider said, ‘Well, she’s not going to live very long, so it doesn’t really matter,’” she told me.
When Atkins, the political scientist, first heard that the other coronaviruses that cause common colds may have started as worse pathogens, she immediately thought about what that trajectory means for COVID. “Oh, people like me die off and the ones for whom it’s not a big impact carry on, and COVID becomes a cold,” she told me. “Part of me still feels that way, like there’s a sort of natural eugenics happening.” Eugenics—the concept of improving humanity by encouraging the “fittest” people to have children while preventing the “unfit” from doing so—is most commonly associated with the Holocaust, Aparna Nair, an anthropologist and historian of disability at the University of Oklahoma, told me. But in the 20th century, the concept had broad support from physicians and public-health practitioners, who saw it as a scientific way of solving problems such as poverty and poor health; it influenced the development of IQ tests, marriage counseling, and immigration laws. Eugenics is “often framed as part of a past that is over,” Nair said. “I think the pandemic has demonstrated that that’s not entirely the case.” Most Americans today would probably think the concept reprehensible and few are actively pursuing it. But when a society acts as if the deaths of vulnerable people are unavoidable, and does little to lessen their risks, it is still implicitly assigning lower value to certain lives.
Covid isn’t going away. With eradication long off the table, the disease will become a permanent part of our lives—another serious infectious threat added to a ledger already full of them. “Everyone who’s immunocompromised will have to figure out what their normal looks like—and it isn’t going to look like the normal for other people,” Ryan, of UC San Francisco, told me.
New treatments could help. Paxlovid, an antiviral drug from Pfizer, can reduce the risk of hospitalization and death from COVID by 88 percent, as long as patients are treated within five days of their first symptoms (although the NIH notes that the drug shouldn’t be given alongside certain immunosuppressants). Evusheld, a two-antibody cocktail from AstraZeneca, can reduce the risk of developing COVID, and though less effective against Omicron, it is still protective; the FDA issued an emergency use authorization for the cocktail to prevent infections in immunocompromised people.
But these drugs are in short supply. The government has ordered only 1.7 million doses of Evusheld and distributed 400,000, which is woefully inadequate given that the U.S. has at least 7 million immunocompromised adults. Many institutions have only enough for their most severely immunosuppressed patients, “and there’s people like me who don’t even come close to meeting the cut,” UChicago Medicine’s Landon told me. Even patients who clear the high bar of medical need might not be able to get a dose quickly; some hospitals have had to run lotteries to decide who gets the drugs. “It’s truly not acceptable,” said Cheung, who got Evusheld only by pestering every medical contact she had—a route not available to people without connections, time, or privilege. For her and others, this problem compounds their sense that their government deems them dispensable, especially considering the far-greater effort put into producing and distributing vaccines. “There’s a drug that could prevent immunocompromised people who aren’t protected from vaccines from dying,” Ryan said. “Shouldn’t they have access to it before we decide that COVID belongs in the same category as the flu?”
Beyond equitable access to treatments, the people I spoke with mostly want structural changes—better ventilation standards, widespread availability of tests, paid sick leave, and measures to improve vaccination rates. Above all else, they want flexibility, in both private and public spaces. That means remote-work and remote-school options, but also mask mandates for essential spaces such as grocery stores and pharmacies, which could be toggled on or off depending on a community’s caseload. Without better, more available treatments or more structural changes, immunocompromised people will still depend on measures that prevent infections. Maintaining them would require, at times, that others make some allowance for their heightened risk. But in terms of what individual people can do for them, the most common request I heard was: Just have a heart. Regardless of your own choices, don’t jeer at us for being mindful of our higher risks, and definitely don’t tell us that our lives are worth less.
All of these measures would protect society as a whole from infectious diseases in general. They would also require some upfront investment in deciding how, exactly, they would work—should companies be required to offer remote work, when possible, for some duration? What’s the threshold for switching on mask requirements? These policies represent added expense and effort for our institutions, but this is the question that the U.S. now faces: COVID has added burdens to our society; who will bear their weight? Immunocompromised people often hear that the world didn’t make accommodations for them before the pandemic and shouldn’t be expected to do so after. But in the past, infectious diseases did prompt big social changes. A massive infrastructure was created to meet the yearly onslaught of influenza, including antivirals, annual vaccines, and a global surveillance system that tracks new strains. After the polio epidemics of the 1940s, “there was a wave of interest in remote schooling and an increasing number of people who used phones and other technologies to finish school and go to university,” Nair, the historian of disability, told me.
And in the late 20th century, the notion of disability itself began to shift. It used to be seen as an entirely medical problem—something that emerges from a person’s biology and can be fixed, Nair said. But the disability-rights movement ushered in a more social model, in which disability is as much about a person’s environment as it is about their body. People who use wheelchairs are more enabled in spaces with ramps and accessibility buttons on doors. Similarly, equitable access to Evusheld and flexible working policies would make immunocompromised people less disabled in an era where COVID is here to stay.
COVID will eventually become endemic—a term “with so many definitions that it means almost nothing at all,” as my colleagues Katherine J. Wu and Jacob Stern wrote. “The error I hear so often now is to use the notion of an endemic virus as a reason for abdication—to drop precautions quickly and not do the more important and difficult work of putting in place the societal measures that would make living with coronavirus more tolerable,” Ryan said. “We need to earn the ability to switch from emergency to endemic.” Fashioning a world in which being immunocompromised requires fewer compromises is possible and is not too onerous. And even if people reject the moral argument for creating such a world, there are two good, selfish reasons to build it nonetheless.
First, the coronavirus evolves rapidly in people with weakened immune systems, who also suffer longer infections and are contagious for more time. The Alpha variant of the first pandemic winter likely evolved in this way, and Omicron may have too. “It’s quite possible that a new variant that harms someone with a normal immune system could come from an immunocompromised person who they failed to protect,” Kim, the Washington University rheumatologist, told me.
Second, the immune system weakens with age, so while most people will never be as vulnerable as an organ-transplant recipient, their immunity will still become partly compromised. Respecting the needs of immunocompromised people isn’t about disproportionately accommodating some tiny minority; it’s really about empathizing with your future self. “Everyone’s going to deal with illness at some point in their life,” Levantovskaya said. “Don’t you want a better world for yourself when that time comes?”
The Atlantic’s COVID-19 coverage is supported by grants from the Chan Zuckerberg Initiative and the Robert Wood Johnson Foundation. Ed Yong is a staff writer at The Atlantic, where he covers science.
If the immunocompromised were a state, it would be the fifth largest in the nation—about the size of Pennsylvania. If they all worked in the same industry, they’d be the size of the hospitality labor force. There are about as many immunocompromised people as there are Americans over 80 years of age. You might not know it—or might not have known it until recently—but if you know someone from Pennsylvania, if you know someone who works at a restaurant or a hotel, or if you know someone over 80, you’re just as likely to know someone who’s immunocompromised. If you include the people who live or are in regular contact with the immunocompromised—spouses, children, relatives, roommates—then it becomes clear that this is not a small sliver of America.
“What Exactly Is the Plan for Us?” For the immunocompromised, the pandemic has been scarier, riskier, and longer. And with vaccines not offering safety, the question is: What will?
BY TIM REQUARTH OCT 12, 2021, Slate.com
Mary Baliker, a 58-year-old kidney transplant recipient living in Middleton, Wisconsin, is no stranger to blood tests. But this one was different. As part of a clinical study on antibody responses, she has been periodically FedEx-ing her blood to Johns Hopkins, where doctors have been looking for immune responses to the Moderna vaccine. Because she takes immunosuppressive drugs so her body doesn’t reject the donated organ, it wasn’t very likely that the vaccine would prompt the immune response it is supposed to. Nevertheless, she held out hope. When the final results came back—negative, no antibodies—she was heartbroken. “I guess all my fear of not building antibodies had just been proved,” she said. “I was discouraged. I just tried not to think about it.”
Baliker is one of many Americans whose immune systems are weakened either because of disease or because of the medications used to treat disease. It’s tricky to tally the exact number of the immunocompromised, which includes people with a wide range of conditions—not only transplant patients but also people with arthritis, HIV/AIDS, multiple sclerosis, inflammatory bowel disease, and cancer. A recent estimate puts the proportion of privately insured adults ages 18 to 64 on immunosuppressives at 2.8 percent, or some 3.6 million Americans. But Dr. Beth Wallace, a rheumatologist at the University of Michigan Medical School who authored the study, said this estimate didn’t account for those on Medicare or Medicaid, nor did it count innately immunocompromised adults not on immunosuppressives. She noted pinning down the true number of Americans with weakened immune systems is surprisingly difficult, but some experts I spoke with thought it could be as high as 10 million or even 15 million.For this group, breakthrough infections aren’t a source of anxiety; they’re a mortal threat: A positive COVID test means they face a 1 in 10 chance of death.
To put that in perspective, if the immunocompromised were a state, it would be the fifth largest in the nation—about the size of Pennsylvania. If they all worked in the same industry, they’d be the size of the hospitality labor force. There are about as many immunocompromised people as there are Americans over 80 years of age. You might not know it—or might not have known it until recently—but if you know someone from Pennsylvania, if you know someone who works at a restaurant or a hotel, or if you know someone over 80, you’re just as likely to know someone who’s immunocompromised. If you include the people who live or are in regular contact with the immunocompromised—spouses, children, relatives, roommates—then it becomes clear that this is not a small sliver of America.
Which is why—even though vaccines are on the verge of being authorized for kids, and boosters could be authorized for everyone in a matter of months—we need to consider how the pandemic is going for the many Americans who still must face it immunologically unarmed. As the delta variant circulates, the stakes are even higher. Take transplant patients like Baliker: According to a recent study, transplant recipients are 82 times more likely to get a breakthrough infection, and 485 times more likely to be hospitalized or die. For this group, breakthrough infections aren’t a source of anxiety; they’re a mortal threat: A positive COVID test means they face a 1 in 10 chance of death.
What’s next for immunocompromised people—what the pandemic easing really looks like for them—is a complicated puzzle. Many people, worn down from pandemic restrictions, seem to no longer want to hear about the enormous group of people that the progress with COVID vaccines has been leaving behind. “Sometimes it gets to the point that you feel a little bit marginalized, and that no one cares about people like me who are higher risk,” Baliker told me. As COVID becomes an ever-present feature of our lives, she wonders, “What exactly is the plan for us?” The real answer to that question lies in a patchwork of surprising—and, to some, controversial—solutions that are just beginning to come into focus.
Not all immunocompromised patients are as vulnerable as transplant patients, especially after vaccination. However, because the immunocompromised were left out of the original vaccine trials, scientists have had to play catch-up to determine exactly how much protection immunization might offer. Dr. Dorry Segev, director of the Epidemiology Research Group in Organ Transplantation at Johns Hopkins, has spent the past year and a half furiously studying this question. In 2021 alone, he’s published nearly 40 papers on the topic, and he recently received a $40 million grant from the National Institutes of Health to study the effect of booster shots in kidney transplant patients like Baliker. “It’s been a real black box, but we’re starting to make progress,” he said.
In March, Segev published a pair of studies showing only half of kidney transplant recipients produced an antibody response even after the second dose of an mRNA vaccine. In a small study on Johnson & Johnson vaccine recipients, only two of 12 transplant recipients produced antibodies. As for boosters, Segev collected antibody counts of transplant recipients who sought out third doses this spring, before boosters were authorized by the Food and Drug Administration. Of those who didn’t respond to the first two shots, only a third responded to the booster—which is in line with estimates from a larger study from France. What these studies suggest is that a significant number of transplant recipients, like Baliker, are left without any antibody protection even after multiple attempts at inoculation.
People with other conditions fare better, although results are mixed. People with autoimmune diseases such as rheumatoid arthritis generally produced antibodies in response to the first dose of an mRNA vaccine, although consensus is emerging that those taking widely prescribed drugs that suppress B cell function, such as rituximab, are far less likely to do so. A case series suggested that some patients with lupus, myositis, vasculitis, and Sjogren’s syndrome who take certain drugs do not develop antibodies at all. People with blood cancers may also have significant difficulty mounting an immune response. A French study found that only half of blood cancer patients produced antibodies, although it’s highly dependent on the type of blood cancer. According to a study led by researchers at the Leukemia & Lymphoma Society, only 44 percent of patients with mantle cell lymphoma produced antibodies, but 99 percent of Hodgkin lymphoma patients did. Out of all blood cancer nonresponders given boosters, 33 percent still failed to produce antibodies. Although there’s more to the immune system than antibodies, it’s almost certain that large numbers of people have diminished or no protection, even after a booster shot.
Segev estimates there’s probably at least a million or so people who will need some sort of protection beyond the vaccine. We’re in wave four now, he said, “but what happens at wave 11? I’m healthy and vaccinated, so I’ll just wear masks in the grocery store. And if I get sick, it won’t be that scary.” But, he said, “many immunocompromised will have to put their entire lives on hold again, or risk death.”
They know that. And as with so many things about this pandemic, they also know it didn’t have to be this way. For other infectious diseases, such as measles and polio, the immunocompromised are protected because the rest of us are vaccinated, creating herd immunity, that situation in which new outbreaks fizzle instead of spiraling out of control. When COVID vaccines arrived on the scene, many grew hopeful that Americans would rise to the occasion and get immunized to protect society’s most vulnerable. Those hopes were dashed as politicization and disinformation fueled widespread vaccine refusal.
And the immunocompromised are really getting fed up with this state of affairs. I spoke with Dr. Larry Saltzman, a leukemia patient who is also a former family practice physician. He’s currently principal investigator of the Leukemia & Lymphoma Society’s National Patient Registry, and he published two of the studies above. When he was vaccinated earlier this year, his body didn’t seem to produce any measurable antibody immune response. “It’s essentially as if I’m vaccinated, yet I don’t really have a defense against COVID.” This means he’s never been able to let up precautions. “My blood cancer has caused me and my wife to be far more sheltered than any of our friends. I haven’t seen my mother, who’s 89, since March 2020.”“People living with these conditions have been isolated because that’s the way they can keep themselves safe. And that isolation then has mental health impacts.”— Dr. Shilpa Venkatachalam
Saltzman assumed the availability of effective, free vaccines would enable his community to step up for him. But where he lives, in Sacramento, California, the vaccination rate was only about 50 percent when it started leveling off (though mandates’ recent success might start to change this for the better). “Frankly, I’m very angry. Really angry. Herd immunity—and I hate saying this because I don’t want to sound selfish or self-serving—it’s to protect people like me because I am so vulnerable to this thing.” Professionally, he’s at a loss too. “In my role here, I’ve heard from people who have [since] died from COVID, I’ve heard of people who’ve come down with COVID, they’ve been hospitalized. They have long COVID, you know, and they’re just beside themselves. They don’t know what to do.”
Saltzman is fortunate because he can work from home and restrict his social contacts. But some people with blood cancer don’t have those choices. Dr. Gwen Nichols, the Leukemia & Lymphoma Society’s chief medical officer who collaborated with Saltzman on the studies above, said that their information resource center is currently flooded with back-to-school concerns. Parents with blood cancers who have healthy children are nervous that their kids could bring the virus home from school, particularly in places where mask mandates are outlawed and vaccination rates are low. “People should realize that cancer doesn’t just affect old people. It affects people in the prime of their lives.”
That includes children. Leukemia is the most common pediatric cancer, affecting more than 41,000 children and teens, with most diagnoses between 2 and 5 years of age. “These are young kids who can’t get vaccinated, and it’s tragic that people around them might expose them when they’re already struggling so hard to have a life,” Nichols said. “If I was a parent of a kid with leukemia, I’d be really mad at anyone who didn’t want to help that kid survive.”
Saltzman’s and Nichols’ anger and disappointment were echoed by Dr. Shilpa Venkatachalam, associate director of patient-centered research at the Global Healthy Living Foundation, a nonprofit that supports and advocates for people living with chronic medical conditions such as arthritis. This August, the foundation surveyed 2,137 of its members about the rise of the delta variant. Before delta, some members were cautiously resuming their favorite activities for the first time in over a year, such as going to restaurants or socializing indoors. But when delta arrived, they had to dial those activities back again. In the survey, multiple members reported feeling “sad” and “angry” that people won’t get vaccinated. The relentlessness of the virus is taking a toll on them—and not just physically. “People living with these conditions have been isolated because that’s the way they can keep themselves safe,” Venkatachalam said. “And that isolation then has mental health impacts.”
Venkatachalam, who lives with arthritis, is hopeful that some of the flexibility afforded to the immunocompromised during the pandemic could at least herald a cultural change in accommodations for people who may not administratively qualify as disabled. “During COVID, there were work accommodations for many people,” she said. “A long-term concern for our community is, will there continue to be flexibility by employers for people living with autoimmune inflammatory conditions?” Those affected need permanent remote work options, flexible commute times to avoid crowded public transportation, and for insurance companies to continue pandemic-era policies like covering telehealth (though there are already signs the latter is being walked back). When leaving your house entails significant risk, it just makes ethical sense to give people the tools to mitigate those risks, particularly because they are possible.
If the immunocompromised do catch COVID, more drugs and treatments could be on the horizon to help them. Merck just announced a promising antiviral, and monoclonal antibodies (which famously may have saved the ass of a certain former president) are already available. Monoclonal antibodies can also confer passive immunity, which protects those who can’t make antibodies themselves. [Editor’s note: Read this accompanying piece about how that works.] Monoclonals aren’t a permanent solution or a cure, more of an immunological loan, but for those at highest risk, they could even be given as a preventive measure—although not FDA-approved for this purpose yet. Data from AstraZeneca’s antibody compound seems promising, though, and the company has just applied to the FDA for emergency use authorization. But there are a few hitches. Monoclonal antibodies require blood infusions, and there isn’t a “limitless supply” of sites that can administer the drug, according to Dr. Emily Blumberg, director of transplant infectious diseases at the Perelman School of Medicine at the University of Pennsylvania. Because infusion sites are also used for treatments such as chemotherapies, she said, there could be logistical hurdles to getting the lifesaving treatment into arms in time.
Another more troubling hitch is that monoclonals are currently being rationed by the federal government because of short supply—in part because so many are being used to save the lives of the unvaccinated. And some politicians are cynically exploiting the treatment to sustain the political benefit of opposing vaccine mandates: Florida Gov. Ron DeSantis cut a side deal with GlaxoSmithKline for monoclonals while undermining efforts to increase vaccination. This means this kind of scenario could be playing out in Florida and elsewhere: An immunocompromised patient lying in bed, dying, because an available, lifesaving treatment has been rerouted to the arms of people who’ve refused to be vaccinated. “It’s terrible that the immunosuppressed, who are vulnerable and desperate and doing anything they possibly can to seek protection, would be denied the only protective avenue that they have because people are refusing the vaccine, acting recklessly, getting infections, and then soaking up the monoclonal antibodies. That’s a disappointing thought for me,” said Segev, the Johns Hopkins transplant researcher.
So what are we to do? In terms of policy, Baliker, the kidney transplant patient, said she welcomes the vaccine mandates politicians like DeSantis oppose. “I know not everybody agrees with the government coming down and saying, if you have a hundred employees or more, that you need to get vaccinated, but I can’t tell you how happy I was when I heard that.” Apart from what looks to be a highly effective employer mandate, there’s a new bill proposing mandated vaccination for domestic travel, and Gov. Gavin Newsom of California just announced that all eligible children K–12 will have to be vaccinated before next fall. More mandates are expected to be announced in the coming weeks and months.
Baliker hopes these policies mean herd immunity is closer than it currently feels, and that she’ll soon be able to return to what were once everyday activities without fear. Baliker, who has endured four kidney transplants, said, “This isolation is the hardest thing I’ve ever done, not being able to do the things that everyone else does.” When I asked what she would want people to know about those in her position, she reminded people that they never really know for certain how long they will be able-bodied: “There’s a lot of people that are at risk, and it could be your family, or it could be yourself, or your friends.”
Nichols, the chief medical officer of the Leukemia & Lymphoma Society, put it more bluntly. That politicians don’t encourage people to get vaccinated or take basic public health precautions, she said, “just seems like a lack of empathy. Put yourself in someone else’s shoes for once.”